← Return to Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

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@johnbishop

Hello @jerseyjames, Welcome to Mayo Clinic Connect. Thanks for sharing your PMR experience. It sounds a lot like that of others who have shared their PMR story with trying to taper off of prednisone. My PMR is currently in remission since 2018 when I was able to taper off of prednisone for the second time. My first bout with PMR was 2007 and I was started with 20 mg prednisone. It took me three and half years to taper off with the last six months spent going between 1 mg and 1/2 mg dosage until I was finally able to stop taking it with only minor discomfort/pain. The pain from my occurrences of PMR was mostly in the shoulders, arms, hands but some in the legs. The PMR stayed in remission from 2010 until 2016 and I again went on 20 mg prednisone. This time it took about a year and half to taper off. Early in the tapering I tried to go down by 5 mg's a week but later found 2-1/2 mg worked a little better for me. I also had the doctor prescribe some 2.5 mg and 1 mg pills so that I could easily decrease in smaller amounts if needed. My rheumatologist worked with me on different tapering suggestions which were really helpful the first time around and I was able to build on that success the second time around.

There is another discussion which you might find helpful - PMR Anyone?: https://connect.mayoclinic.org/discussion/pmr-anyone/

@alanbruce @olegraymare @rolandhp @phoenix0509 @terre and other members may be able to share their experience with you.

I never had a thought about impacting pain-receptors in the brain. From what I've read PMR is driven by inflammation. I do think pain-receptors in the brain can trigger pain for other conditions with PMR like symptoms. There is a little information in this article - What Is Polymyalgia Rheumatica? These Are the Signs You Could Have It: https://creakyjoints.org/education/what-is-polymyalgia-rheumatica/

Have you discussed your thoughts with your doctor or rheumatologist?

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Replies to "Hello @jerseyjames, Welcome to Mayo Clinic Connect. Thanks for sharing your PMR experience. It sounds a..."

Hello again John. I think your view of PMR symptoms being largely driven by inflammation is correct clinically, but my situation seems to be consistent with perhaps 20% of PMR patients. My Sed Rate and CRP have been normal over recent months. That said, my pain is pretty intense, especially at the shoulders and neck muscles when I titrate down below 10 mg's per day. So if a given Rheumatologist is of the school that believes there should be a direct proportion between these test-results for inflammation and the level of patient discomfort, he/she might either look for some other causation, or just put me in the 20%.

I'll see my doc tomorrow and he has been very supportive but I'm sort of putting him between a rock and a hard place as we all know that staying on Prednisone long-term is not desirable and his goal of getting me down to 5 mg or less seems to be the gold standard. Perhaps he will recommend some other type of taper schedule such as a little higher does every 2nd or 3rd day, or some such. I also wonder it might not be a bad idea to approach this in parallel from an adrenal insufficiency direction, and consult with an endocrinologist. Just what I need, another doctor.

All things considered, I am in much better shape than 6 months ago as then I could not get up from a chair, or tuck in a shirt, or pick up something off the floor, and carpal tunnel was very painful in the hand, All of that is history - and the shoulders/neck remains....all somewhat exacerbated by 50 years of Ankylosing Spondylitis and the fused spine/neck. But more stiffness than pain from that.

Thanks again for your support - always interested to know if any of this resonates across the fruited plain.

Jim